| 1. |
- Andrews, Carin, et al.
(författare)
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A Goal-Directed Program for Wheelchair Use for Children and Young People with Cerebral Palsy in Uganda : An Explorative Intervention Study
- 2023
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Ingår i: Journal of Clinical Medicine. - : MDPI. - 2077-0383. ; 12:6
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Tidskriftsartikel (refereegranskat)abstract
- In this exploratory study, we investigate whether goal-directed intervention for wheelchairs can increase the activities of daily living for children and young people with cerebral palsy (CP) when implemented in rural Uganda. Thirty-two children and young people with CP (aged 3–18 years) participated in a home-visit intervention program, which included donating wheelchairs and setting individual goals. Goal achievement, frequency of wheelchair use, condition of wheelchairs, and caregivers’ perspectives were collected by interviews at 6–10 month after the start of intervention and the after three years. Our result show that most wheelchairs were in good condition and frequently used after 6–10 month with 83% goal achievement (132/158 goals; mean 4.3 (range 0–7). The caregivers reported several advantages (e.g., the child being happier) and few disadvantages (e.g., poor design and durability). At the three-year follow-up, only eleven wheelchairs were still used by 23 available participants (seven deceased and two moved). The children achieved 60% of their goals (32/53 goals mean 2.9; range 1–5). This demonstrates that the goal-directed intervention program for wheelchairs can be successfully implemented in a low-income setting with a high rate of goal achievement and frequent wheelchair use, facilitating participation. However, maintenance services are crucial to obtain sustainable results.
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| 2. |
- Andrews, Carin, et al.
(författare)
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Impairments, functional limitations, and access to services and education for children with cerebral palsy in Uganda : a population-based study
- 2020
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Ingår i: Developmental Medicine & Child Neurology. - : Mac Keith Press. - 0012-1622 .- 1469-8749. ; 62:4, s. 454-462
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Tidskriftsartikel (refereegranskat)abstract
- AIM: To describe the functional limitations and associated impairments of children with cerebral palsy (CP) in rural Uganda, and care-seeking behaviour and access to assistive devices and education.METHOD: Ninety-seven children with CP (42 females, 55 males; age range 2-17y) were identified in a three-stage population-based screening with subsequent medical examinations and functional assessments. Information on school and access to care was collected using questionnaires. The data were compared with Swedish and Australian cohorts of children with CP. We used the χ2 test and linear regression models to analyse differences between groups.RESULTS: Younger children were more severely impaired than older children. Two-fifths of the children had severe impairments in communication, about half had intellectual disability, and one third had seizures. Of 37 non-walking children, three had wheelchairs and none had walkers. No children had assistive devices for hearing, seeing, or communication. Care-seeking was low relating to lack of knowledge, insufficient finances, and 'lost hope'. One-third of the children attended school. Ugandan children exhibited lower developmental trajectories of mobility and self-care than a Swedish cohort.INTERPRETATION: The needs for children with CP in rural Uganda are not met, illustrated by low care-seeking, low access to assistive devices, and low school attendance. A lack of rehabilitation and stimulation probably contribute to the poor development of mobility and self-care skills. There is a need to develop and enhance locally available and affordable interventions for children with CP in Uganda.WHAT THIS PAPER ADDS: Development of mobility and self-care skills is lower in Ugandan than Swedish children with cerebral palsy (CP). Older children in Uganda with CP are less impaired than younger children. Untreated seizures and impairments of communication and intellect are common. Access to health services, assistive devices, and education is low. Caregivers lack knowledge and finances to seek care and often lose hope of their child improving.
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| 3. |
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| 4. |
- Ibinda, Fredrick, et al.
(författare)
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Magnitude and factors associated with nonadherence to antiepileptic drug treatment in Africa : a cross-sectional multisite study
- 2017
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Ingår i: Epilepsia Open. - : John Wiley & Sons. - 2470-9239. ; 2:2, s. 226-235
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Tidskriftsartikel (refereegranskat)abstract
- Objectives: The epilepsy treatment gap is large in low- and middle-income countries, but the reasons behind nonadherence to treatment with antiepileptic drugs (AEDs) across African countries remain unclear. We investigated the extent to which AEDs are not taken and associated factors in people with active convulsive epilepsy (ACE) identified in cross-sectional studies conducted in five African countries.Methods: We approached 2,192 people with a confirmed diagnosis of ACE for consent to give blood voluntarily. Participants were asked if they were taking AEDs, and plasma drug concentrations were measured using a fluorescence polarization immunoassay analyzer. Information about possible risk factors was collected using questionnaire-based clinical interviews. We determined factors associated with nonadherence to AED treatment in children and adults, as measured by detectable and optimal levels, using multilevel logistic regression.Results: In 1,303 samples assayed (43.7% were children), AEDs were detected in 482, but only 287 had optimal levels. Of the 1,303 samples, 532 (40.8%) were from people who had reported they were on AEDs. The overall prevalence of nonadherence to treatment was 63.1% (95% confidence interval [CI] 60.5–65.6%) as measured by detectable AED levels and 79.1% (95% CI 73.3–84.3%) as measured by optimal AED levels; self-reported nonadherence was 65.1% (95% CI 45.0–79.5%). Nonadherence was significantly (p < 0.001) more common among the children than among adults for optimal and detectable levels of AEDs, as was the self-reported nonadherence. In children, lack of previous hospitalization and learning difficulties were independently associated with nonadherence to treatment. In adults, history of delivery at home, absence of burn marks, and not seeking traditional medicine were independently associated with the nonadherence to AED treatment.Significance: Only about 20% of people with epilepsy benefit fully from antiepileptic drugs in sub-Saharan Africa, according to optimum AEDs levels. Children taking AEDs should be supervised to promote compliance.
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| 5. |
- Kakooza-Mwesige, Angelina, et al.
(författare)
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Cerebral palsy in children in Kampala, Uganda : clinical subtypes, motor function and co-morbidities
- 2015
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Ingår i: BMC Research Notes. - : BioMed Central. - 1756-0500. ; 8
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Cerebral palsy (CP) is a common chronic childhood disorder worldwide. There is limited information about the CP panorama in sub-Saharan Africa. Our aim was to describe the clinical subtypes, gross and fine motor functions and presence of co-morbidities in a group of children with CP attending a tertiary hospital in Uganda.METHODS: Children with CP in the age range of 2-12 years visiting the paediatric CP clinic at Mulago Hospital, Kampala, were enrolled. Screening and inclusion were based on a three-stage procedure: i) Two screening questions from the Ten Question Screen; ii) Clinical assessments adapted from the Surveillance for Cerebral Palsy in Europe (SCPE); iii) Clinical examinations and diagnoses of subtype, severity level and co-morbidities. Caregivers were interviewed using questionnaires to provide information on child's medical history and co-morbidities. Co-morbidity scores were calculated for each child.RESULTS: One hundred and thirty five children with CP were enrolled (72 males, 63 females, median age 3 years 5 months, IQR-2 years 4 months-5 years 6 months). Bilateral spastic type was commonest (45%); moderate impairment in gross motor function was present in 43%, with comparable numbers (37%) in the mild and severely impaired fine motor function groups. The severe gross and fine motor function levels were seen in the bilateral spastic and dyskinetic CP subtypes. Signs of learning disability (75%) and epilepsy (45%) were the commonest co-morbidities. Higher co-morbidity scores were obtained in children with dyskinetic CP and severe levels of gross and fine motor function. There was a significant difference in distribution of the co-morbidity scores between the CP subtypes, gross motor and fine motor function levels (p <0.001). Signs of speech and language impairments were associated with bilateral spastic CP and severe gross and fine motor dysfunction (p < 0.05).CONCLUSIONS: Bilateral spastic CP was the main clinical subtype, with signs of learning disability and epilepsy as major causes of co-morbidity. The severity of gross and fine motor function levels was related to severity of clinical CP subtypes. Our findings imply a higher occurrence of birth asphyxia or post natally acquired infections. Improvement in emergency obstetric and postnatal care may reduce this burden.
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| 6. |
- Kakooza-Mwesige, Angelina
(författare)
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Cerebral palsy in Mulago hospital, Uganda : comorbidity, diagnosis and cultural adaptation of an assessment tool
- 2016
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background and aim: Cerebral palsy (CP) is the most common form of chronic motor disability that begins in early childhood and persists throughout life. The clinical features, including motor function, comorbidities and nutritional status, have not been investigated in Uganda. In addition, no assessment tool to measure functional skill development and the level of independence performance in activities of daily living has been developed for these children. The overall aim of this thesis was to describe the neurological, anthropometric and brain imaging findings of Ugandan children with CP and to develop a culturally relevant assessment tool for measuring their functional performance. Methods and participants: Five cross sectional studies (I-V) were carried out at the Mulago National Referral Hospital in Kampala and in varied rural and urban districts within Uganda. Three studies were conducted at the health facility (I-III), while two were conducted in the community (IV-V). Study I investigated the clinical types, motor function and comorbidities of children with CP. In Study II, this same cohort had their anthropometric measurements taken, as well as information about their clinical, feeding and perinatal history to determine their nutritional status and associated factors. Study III, performed on a sub sample of the original cohort, investigated the brain computed tomography (CT) scans and associated features. In Study IV, the Pediatric Evaluation Disability Inventory (PEDI) was translated and cross-culturally adapted to the Ugandan environment to create the PEDI-UG instrument. The psychometric properties of the new PEDI-UG instrument was validated in Study V. Results: Bilateral spastic CP was the main clinical subtype (45%). Severe gross and fine motor function levels were more common in the bilateral spastic and dyskinetic CP subtypes. Signs of learning disability (75%) and epilepsy (45%) were the most common comorbidities. Speech and language impairments were associated with bilateral spastic CP and severe gross and fine motor dysfunction (Study I). More than half (52%) of the children with CP were malnourished, with being underweight (42%) presented as the most common form. Malnutrition was associated more with children 5 years of age or older, and those with a history of complications during the neonatal period (Study II). The distribution of brain image patterns differed from that seen in high income countries with more primary grey matter injuries (PGMI) (44%) and normal scans (31%) and very few primary white matter injuries (4%). PGMI were more common in children with a history of hospital admission following birth (Study III). In the culturally adapted PEDI-UG, overall 178 of the original 197 PEDI items (90%) were retained, with a number of modifications in the remaining items, to create the final 185-item PEDI-UG. (Study IV). Most activities of the culturally adapted PEDI UG (95%) showed acceptable fit to the Rasch model. In addition, the caregiver assistant rating scale was changed from a six-point to four-point rating scale (Study V). Conclusions: There was a large proportion of severely affected children with CP in this cohort, with frequent malnutrition and more PGMI. These results suggest a different etiology of CP in infants born full-term between sub-Saharan Africa and high-income countries. Our findings could imply a higher occurrence of birth asphyxia, postnatally acquired infections or other varied insults around the last trimester period which may possibly benefit from improved emergency obstetric and postnatal care. The culturally adapted PEDI-UG instrument with a four categories caregiver assistant rating scale is appropriate, providing a valid measure of the functional performance of typically developing children from the age of 6 months to 7.5 years in Uganda and other similar African contexts.
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| 7. |
- Kakooza-Mwesige, Angelina, et al.
(författare)
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Emerging Viral Infections in Sub-Saharan Africa and the Developing Nervous System : A Mini Review
- 2018
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Ingår i: Frontiers in Neurology. - : Frontiers Media S.A.. - 1664-2295. ; 9
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Forskningsöversikt (refereegranskat)abstract
- The global public health concern is heightened over the increasing number of emerging viruses, i.e., newly discovered or previously known that have expanded into new geographical zones. These viruses challenge the health-care systems in sub-Saharan Africa (SSA) countries from which several of them have originated and been transmitted by insects worldwide. Some of these viruses are neuroinvasive, but have been relatively neglected by neuroscientists. They may provide experiments by nature to give a time window for exposure to a new virus within sizeable, previously non-infected human populations, which, for instance, enables studies on potential long-term or late-onset effects on the developing nervous system. Here, we briefly summarize studies on the developing brain by West Nile, Zika, and Chikungunya viruses, which are mosquito-borne and have spread worldwide out of SSA. They can all be neuroinvasive, but their effects vary from malformations caused by prenatal infections to cognitive disturbances following perinatal or later infections. We also highlight Ebola virus, which can leave surviving children with psychiatric disturbances and cause persistent infections in the non-human primate brain. Greater awareness within the neuroscience community is needed to emphasize the menace evoked by these emerging viruses to the developing brain. In particular, frontline neuroscience research should include neuropediatric follow-up studies in the field on long-term or late-onset cognitive and behavior disturbances or neuropsychiatric disorders. Studies on pathogenetic mechanisms for viral-induced perturbations of brain maturation should be extended to the vulnerable periods when neurocircuit formations are at peaks during infancy and early childhood.
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| 8. |
- Kakooza-Mwesige, Angelina, et al.
(författare)
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Grey matter brain injuries are common in Ugandan children with cerebral palsy suggesting a perinatal aetiology in full-term infants
- 2016
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Ingår i: Acta Paediatrica. - : Wiley-Blackwell Publishing Inc.. - 0803-5253 .- 1651-2227. ; 105:6, s. 655-664
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Tidskriftsartikel (refereegranskat)abstract
- AIM: There is limited literature on brain imaging studies of children with cerebral palsy (CP) in low and middle income countries. We investigated neuroimaging patterns of children with CP attending a tertiary referral centre in Uganda to determine how they differed from studies reported from high income countries and their relationship with prenatal and postnatal factors.METHODS: Precontrast and postcontrast computed tomography (CT) scans of 78 CP children aged 2-12 years were conducted using a Philips MX 16-slice CT scanner. Two radiologists, blinded to the patient's clinical status, independently reviewed the scans.RESULTS: Abnormal CT scans were detected in 69% of the children sampled, with very few having primary white matter injuries (4%). Primary grey matter injuries (PGMI) (44%) and normal scans (31%) were most frequent. Children with a history of hospital admission following birth were three times more likely to have PGMI (odds ratio [OR] 2.8; 95% CI 1.1-7.1), suggesting a perinatal period with medical complications.CONCLUSION: Brain imaging patterns in this group of CP children differed markedly from imaging studies reported from high income countries, suggesting a perinatal aetiology in full-term infants and reduced survival in preterm infants.
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| 9. |
- Kakooza-Mwesige, Angelina, et al.
(författare)
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Malnutrition is common in Ugandan children with cerebral palsy, particularly those over the age of five and those who had neonatal complications
- 2015
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Ingår i: Acta Paediatrica. - : Wiley-Blackwell Publishing Inc.. - 0803-5253 .- 1651-2227. ; 104:12, s. 1259-1268
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Tidskriftsartikel (refereegranskat)abstract
- AIM: Poor growth and malnutrition are frequently reported in children with cerebral palsy in developed countries, but there is limited information from developing countries. We investigated the nutritional status of Ugandan children with cerebral palsy and described the factors associated with poor nutrition.METHODS: We examined 135 children from two to 12 years with cerebral palsy, who attended Uganda's national referral hospital. A child was considered underweight, wasted, stunted or thin if the standard deviation scores for their weight for age, weight for height, height for age and body mass index for age were ≤-2.0 using World Health Organization growth standards. Multivariable logistic regression identified the factors associated with nutritional indicators.RESULTS: Over half (52%) of the children were malnourished, with underweight (42%) being the most common category, followed by stunting (38%), thinness (21%) and wasting (18%). Factors that were independently associated with being malnourished were as follows: presence of cognitive impairment, with an adjusted odds ratio (aOR) of 4.5, being 5 years or older (aOR = 3.4) and feeding difficulties in the perinatal period (aOR = 3.2).CONCLUSION: Malnutrition was common in Ugandan children with cerebral palsy and more likely if they were 5 years or more or had experienced neonatal complications.
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| 10. |
- Kakooza-Mwesige, Angelina, et al.
(författare)
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Prevalence of cerebral palsy in Uganda : a population-based study
- 2017
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Ingår i: The Lancet Global Health. - : Elsevier. - 2214-109X. ; 5:12, s. e1275-e1282
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Few population-based studies of cerebral palsy have been done in low-income and middle-income countries. We aimed to examine cerebral palsy prevalence and subtypes, functional impairments, and presumed time of injury in children in Uganda.METHODS: In this population-based study, we used a nested, three-stage, cross-sectional method (Iganga-Mayuge Health and Demographic Surveillance System [HDSS]) to screen for cerebral palsy in children aged 2-17 years in a rural eastern Uganda district. A specialist team confirmed the diagnosis and determined the subtype, motor function (according to the Gross Motor Function Classification System [GMFCS]), and possible time of brain injury for each child. Triangulation and interviews with key village informants were used to identify additional cases of suspected cerebral palsy. We estimated crude and adjusted cerebral palsy prevalence. We did χ2 analyses to examine differences between the group screened at stage 1 and the entire population and regression analyses to investigate associations between the number of cases and age, GMFCS level, subtype, and time of injury.FINDINGS: We used data from the March 1, 2015, to June 30, 2015, surveillance round of the Iganga-Mayuge HDSS. 31 756 children were screened for cerebral palsy, which was confirmed in 86 (19%) of 442 children who screened positive in the first screening stage. The crude cerebral palsy prevalence was 2·7 (95% CI 2·2-3·3) per 1000 children, and prevalence increased to 2·9 (2·4-3·6) per 1000 children after adjustment for attrition. The prevalence was lower in older (8-17 years) than in younger (<8 years) children. Triangulation added 11 children to the cohort. Spastic unilateral cerebral palsy was the most common subtype (45 [46%] of 97 children) followed by bilateral cerebral palsy (39 [40%] of 97 children). 14 (27%) of 51 children aged 2-7 years had severe cerebral palsy (GMFCS levels 4-5) compared with only five (12%) of 42 children aged 8-17 years. Few children (two [2%] of 97) diagnosed with cerebral palsy were born preterm. Post-neonatal events were the probable cause of cerebral palsy in 24 (25%) of 97 children.INTERPRETATION: Cerebral palsy prevalence was higher in rural Uganda than in high-income countries (HICs), where prevalence is about 1·8-2·3 cases per 1000 children. Children younger than 8 years were more likely to have severe cerebral palsy than older children. Fewer older children than younger children with cerebral palsy suggested a high mortality in severely affected children. The small number of preterm-born children probably resulted from low preterm survival. About five times more children with post-neonatal cerebral palsy in Uganda than in HICs suggested that cerebral malaria and seizures were prevalent risk factors in this population.FUNDING: Swedish Research Council, Promobilia.
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